I want to share something with you that’s really exciting, but REALLY scary at the same time.
This year in April, there’s a European conference about Tourette Syndrome in Athens, Greece. It’s for doctors and therapists that specialize in TS to learn more and keep up with new changes in TS research. It’s kind of like the conference that the American TSA holds every 5 years, but then just for Europe.
But this year, I get to speak on the conference!!!!! I get to stand up in front of all those people who have gone through years and years of college to get where they are and tell them about my life with Tourette and really give them an inside look on how it really is to have TS instead of just looking at it from the outside!
And I get to share my opinions and ideas about Tourette and about their work! I really can give them my view, as a patient, on how I think they can help people with Tourette! Continue reading
Hey everyone! As many of you may know from visiting my A Little Bit Different: Tourette Syndrome Facebook page, I’m in the middle of putting together another TS documentary with LoganK from Help Spread The Word About Tourette Syndrome. I thought I’d give you all a sneak peak at a few of the profiles going into that documentary, starting with me! To look at some of the rest, just check out the documentary album on my Facebook page!
Hi! I am one of the producers of the upcoming documentary about Tourette Syndrome. I am 18 years old, and I am a freshman in college at Washington University in St. Louis. I’ve had Tourette Syndrome since I was 3 years old, but I wasn’t officially diagnosed until my junior year of high school.
My tics have changed a lot since I was younger, but I have a few tics that have always stayed the same. Some of the tics right now are head and neck jerking, eye rolling, arm jerking, grimacing, picking and biting my lips, repeating words/phrases that I hear, making a yelping or a squeaking sound, saying the word “ouch”, and whistling. I also have OCD, which at times has been harder for me to deal with than the tics.
For me, I’d say it would be nearly impossible to pick one single hardest part of having Tourette. There are just to many challenges that come with having Tourette and just too many ways it has affected me throughout the years. As a child, the hardest part was not knowing why I couldn’t stop my body from doing certain things or why I was different than the other kids.
As I’ve gotten older, I’ve had to come to terms with the fact that my tics and OCD might never get better or go away. I’ve had to deal with stares, the judgments of others and my own judgments of myself. I have amazing friends who support me through everything though, and that sometimes can make all the difference.
I’m a PNP (Philosophy-Neuroscience-Psychology) major at Washington University in St. Louis with a minor in Creative Writing. My goal is to get a masters and a PHD in PNP and go on to do neruoimaging research to study neurological disorders and neuropsychiatric disorders. I love to write fiction and poetry, blog and advocate for Tourette and its associated conditions. I also love animals, especially my new Goldendoodle named Brandy
I think other people should know that having Tourette doesn’t make us all that different. Underneath our tics and obsessions, we are just like everybody else. We’re just a regular people who happen to have tics. Having Tourette is a part of who we are, but it doesn’t define who we are.
EDITOR’S NOTE: This is part 2 of a three-part series on back-to-school anxiety by the Tourette Syndrome Foundation of Canada. Part 1 was published on Wednesday, and part 3 will be published on Friday.
As always, in order to understand how to combat the problem, we first need to understand its causes. “Understanding the reasons that students avoid school is the first step in getting them to return,” writes school psychologist Mary Wimmer. In her 2008 article entitled “Why Kids Refuse to Go to School,” Wimmer stresses that school refusal or school avoidance can’t be attributed to a single cause, it results from a complex mix of factors including mental health problems, family issues and the school environment.
Mental health challenges, whether anxiety, depression, Oppositional Defiance Disorder (ODD), Obsessive Compulsive Disorder, Panic Disorder or some combination of these, account for 90 percent of the cases of school refusal. According to authors Packer & Pruitt (2010), anxiety, more specifically Separation Anxiety, Generalized Anxiety Disorder, and Social/Performance Anxiety, is the leading cause of school avoidance behaviour, affecting 22 percent of school refusers.
Children with Separation Anxiety are usually very young, tend to be preoccupied with the possibility of harm befalling loved ones, and are overly dependent on their parents or caregivers. Social or Performance Anxiety, which accounts for 3.5 percent of school avoidances cases, is slightly different. Continue reading
On Saturday, I went down to the medical school campus once again to meet up with one of my favorite people with TS, Dr. G, and to do the second part of the Tourette study — the MRI.
I met Dr. G in the waiting room and then went back to the MRI control room. There was another woman in the MRI room to help out with the MRI screening and such. She was very friendly and, of course, Dr. G was amazing as usual. I took out my earrings and then went into the MRI room.
I couldn’t believe how big the MRI machine was!! It looked huge! I was told to lay down on the machine, and they got everything set up to make sure I was conferrable. They put pillows on either side of my head to help keep my head still and put this mask-cage-looking thing over my face.
They also put large earphones over my ears that played music so the noise of the machine wasn’t too loud. I was a little nervous — but not too much, surprisingly — and I wasn’t ticcing to much just yet. Continue reading
Hey guys! So the other day I did the first part of the Tourette’s study that I am participating in! I drove down to the medical school campus where the neurology labs are and where I had interviewed the Tourette experts for my documentary.
The woman I interviewed for the documentary who both has Tourette’s and researches it was the one who did the testing, and I was so glad to see her again because (once again) I think she is just awesome!
The first part of the study is the behavioral testing portion, and that’s the portion I did the other day. We went into a fairly small testing room and did the testing and cognitive part first.
I did things like repeat numbers forward and backward, give definitions of vocab words, identify shape patterns, identify colors, and read off colors of words when a different color was written (such as blue or red). The reading of the colors was actually hard! I kept wanting to say the word that was written instead of the color it was written in! Continue reading